This week (13th – 19th June) marks Carers Week 2011. Carers are in many ways unsung heroes, and should be lauded. If you’re a carer, or know someone who is, get involved! : )

There are events on round the country in support of carers week, and you can find out more here.

The MS Society has joined forces with 9 other charities to support Carers Week. Have your say on life as a carer on their annual Carers Week online survey. The theme of this year’s Carers Week is ‘The True Face of Carers’, which aims to recognise the 6 million carers across the UK.

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Time flies, and MS Awareness Week has rolled round again! This week sees many things going on in support of MS Week. MS is in many ways a silent disease with hidden symptoms that aren’t always outwardly apparent, such as pain and fatigue. As a result, many people who aren’t affected by MS in one way or another don’t know terribly much about it. MS Week and World MS Day are our chances to raise awareness of MS and spread information.

World MS Day falls in the middle of MS Week, on Wednesday 25 May. You can sign the 2011 campaign for access to appropriate work petition here.

What’s happening during MS Week?

Putting MS On The Map

The MS Society UK has launched the MS Register – “This globally unique research tool is the world’s first, for any condition, to combine anonymous and confidential information from patients, with clinical data and routine NHS information. The MS Register could have a profound effect, and transform the delivery of care and services for people with MS.” You can find out more about the MS Register and join online, helping to put MS on the map.

There are also Map MS roadshows planned, and it’s not too late to get involved in a Cake Break and raise money in a yum way! Get involved

Be Bold In Blue

The MS Trust has lots planned for MS Week – you can find out more here. Their Be Bold In Blue fundraising event on the 27th May is a great way to get involved and raise money in a fun way, such as a cake sale, or a blue themed quiz night.

It’s great to know that so much is being done to raise awareness of MS, especially as it’s the most common disabling neurological condition affecting young adults in the UK – a stat that’s very close to my heart as I’m only 24 and often meet with exclamations of surprise that I have MS at my age (and have had for several years). The more people that know about MS and understand it, the better it is for everyone as it removes the mystery and fear factor.

Many of the activities are fun and easy to get involved in. You don’t have to have MS to participate, either. Go ahead and get involved! : )

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The Vicar of Baghdad was recently given to me to read, and I found it an inspirational story. Reverend Canon Andrew White has been called ‘Vicar of Baghdad‘ as he presides over the sole Anglican church in Iraq. He also has MS. The book wasn’t given to me for that reason though; it was given to me as it’s a book which restores faith in humanity. There are still some good, decent people in this world.

MS is mentioned in passing a couple of times in the book, but no more. The book is written by Reverend Canon White himself, and details his perseverance with peace efforts in the middle east and the many other causes he immerses himself in. It is clear Reverend Canon White is a wonderful man, does amazing work, and is very selfless. The book is incredibly uplifting, and although I’m not a religious person, I found Reverend Canon White’s story incredibly inspiring for who he is as a person. I take heart in the fact that he is lauded as a wonderful person, and that alone, and not a wonderful person with MS that does amazing things despite his illness. He deserves the credit to himself, not shared with a disease which just so happens to share his body.

Just because we have MS, should we achieve any less?? It may be more difficult at times, and some ingenuity must be called into play in order to achieve what we want, sometimes using a different route, but we are fabulous people. MS doesn’t *have* to be linked to everything we do, achieve, or are – it’s only a passenger in our bodies. MS may have allowed us to discover exactly how strong, ingenious and determined we are, but those qualities were already there within us: MS just helped us to discover to exactly what extent.

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The European Medicines Agency’s Committee for Medicinal Products for Human Use has today (21st January 2011) rejected Merk KGaA’s oral medication for relapsing-remitting MS, Cladribine. Despite currently available research data stating the effectiveness of Cladribine in treating RRMS, it was felt that the risks of the drug outweigh the benefits. As reported on Multiple Sclerosis Blog on about.com, ” In trial, 2% of participants on the drug developed shingles and 4 people developed cancer, while neither of these things were seen in the placebo group.” Whilst it was also reported on the MS Trust Cladribine Factsheet that, “Although the trials so far have shown cladribine to be well tolerated, lymphopenia – an abnormally low level of lymphocytes (white blood cells that fight off disease) occurred more frequently in the cladribine treatment groups. With the exception of lymphopenia, headaches and nasopharyngitis (inflammation of the nasal passages and upper part of the throat) were the most frequently reported adverse events in the three treatment groups. An increased number of people with cancer have also been observed in clinical trials of cladribine which could point to an increased risk of cancer over time and with increasing doses of the drug.”

I can understand a desire for oral medications for MS for those whose bodies won’t tolerate injectible medications, for those who really don’t like self injecting, or for those who don’t meet the criteria for Tysabri etc and can’t tolerate the CRAB drugs. Apart from these reasons, is there really a need for MS oral medications to be developed so quickly? Are they any more effective than the treatments available now? Are the potentially serious side effects outweighed by then benefits of Cladribine? Merk officials plan to rebsubmit a new application for Cladribine in Europe in 2012 with more clinical evidence. I’m assuming that this would have to contain more positive clinical evidence in order to be approved!

It should be noted however that a, “58% relative reduction in yearly relapse rate was seen in the low dose treatment group and a 55% reduction in the high dose treatment group. A reduction in the number of MS lesions as seen on MRI was also observed in the cladribine treatment groups and there was a higher proportion of people who remained relapse free over the study period.”(1) So Cladribine clearly is effective in the treatment of RRMS, but at what potential cost?

Cladribine has been approved for use in Russia and Australia already, and the FDA in America is due to rule on Cladribine by roughly the end of February this year. Although on the whole Cladribine did seem to be well tolerated in trials,I often wonder, as MSers are we expected to put up with worse than usual medication side effects due to having a serious illness, as the side effects are equal to or less than the symptoms we live with, or is it that stronger medications with more serious side effects are needed to control our MS? It’s a fine balancing act either way, and although more treatment options such as oral medications for MS would be very welcome as additional choices other than the main CRAB drugs – the CRAB drugs are available now (along with other treatment possibilities such as Tysabri and Fingolimod [Gilenya]) – a more well rounded oral medication which has been refined for longer strikes me as a better option than one with a list of some rather offputting possible side effects. It depends what we’re willing to put up with when fighting our MS, I suppose. I’m all for throwing every I can at my MS, (possibly even the kitchen sink!), but if I then had to deal with another health complication as the result of a medication used to treat my MS, I’d then be in a worse position!

Some Cladribine Studies

Giovannoni G, Comi G, Cook S, et al. (1)

A placebo-controlled trial of oral cladribine for relapsing multiple sclerosis.

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I’ve come across many instances of describing people with MS as ‘MS sufferers’ recently. Everyone prefers their own terms, as it were, or none at all. It thoroughly annoys me that others take it upon themselves to decide I’m a ‘sufferer’ and to describe me as such. I’m not planning on being up for martyrdom, so no ‘suffering’ with quiet dignity for me, thanks! I plan to grow old disgracefully and have a whale of a time doing it!! I’m a person that happens to have MS (and it’s *my* MS thank you very much, so hands off with the descriptions and names!!), not MS that just happens to have a person attached. We’re people, not a condition. Consider the mental health campaign slogan: see me, not a label.

I prefer to have a riotous time during the good times and enjoy them thoroughly, and although the bad times aren’t great, I decided to kick my MS in the arse and fight it every step of the way (even if it means throwing sand in its eyes!), as opposed to ‘suffering’. Suffering implies a passivity that no MSers whom I know subscribe to. We’re all fab, super folk who are determined and stubborn and fight our MS every step of the way. These are our bodies, it’s our MS, and we decide how we describe ourselves.

Perhaps some people with MS don’t mind at all being described as a ‘sufferer’, and that’s their choice which they make and are happy with. Everyone is entitled to their own opinion, but before the next time you decide to call someone with MS a ‘sufferer’, consider if you have the right to – are we really ‘sufferers’, and what gives you the right to decide if we are?

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It can be difficult to distinguish between a relapse and transient symptoms. Are the symptoms a relapse, or just passing through?

Transient symptoms are short lived symptoms which appear as a result of an exacerbation caused by heat, infection, stress, or any other trigger which aggravates your MS symptoms. These symptoms can be heightened ‘normal’ symptoms which you experience daily, or new symptoms. Transient symptoms pass soon after the trigger is removed.

A relapse, on the other hand, is defined as: “the sudden onset of new MS symptoms, or the reccurrence of old MS symptoms, which last for more than 24 hours”.

After removing any triggers, or adjusting them, such as heat, it’s only time that’ll tell the difference between transient symptoms and a relapse. If the symptoms remain for more than 24 hours, it’s best to phone your MS nurse, as it may be a simple urinary tract infection causing the exacerbation in symptoms, or similarly, it could be a relapse.

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This is a post I drafted in July and then apparently completely forgot about it! After taking Copaxone daily for 9 months I unfortunately became very allergic to one of the ingredients or the preservative included in the injection solution and suffered anaphylaxis, and as a result have now stopped Copaxone. This is a very rare allergic reaction, happening in only a small number of people. Until the reaction, I was incredibly happy on Copaxone and felt it was working well for me as I only had one relapse after about 6 months, so still wanted to publish this post, albeit it very late!

Copaxone is composed of 4 amino acids found in basic myelin protein and derives its name (Glatiremer Acetate) from these: glutamic acid, lysine, alanine, and tyrosine. Copaxone is an immunomodulator used to treat relapsing remitting multiple sclerosis. Myelin is the substance which covers nerves in the central nervous system (CNS) and which is ‘attacked’ by multiple sclerosis.

Injecting Copaxone moderates the immune system, changing the population of T cells from Th1 pro-inflammatory cells to Th2 regulatory cells, which suppress any inflammatory response in the immune system. It is suspected that because Copaxone is similar to myelin, it may act as a ‘distraction’ for the immune system, diverting its attention from attacking the myelin in the CNS to the Copaxone being injected. However, there is no noticeable difference to the integrity of the blood-brain barrier whilst being treated with Copaxone. Although Copaxone increases the number of Th2 regulatory cells, there is no evidence that it suppresses immunity to bacteria and viruses, as it simply re-stabilises the immune system towards an anti-inflammatory response as opposed to the inflammatory response around the myelin associated with multiple sclerosis.

Copaxone is part of a group of treatments for multiple sclerosis called Disease Modifying Therapies (DMTs) but is not Interferon Beta based and does not work in the same way as the other CRAB drugs (Rebif, Avonex and Betaseron) which are Interferon Beta based. Monthly blood tests are not required to monitor liver function when taking Copaxone, but are required when taking any of the other DMTs.

In order to be offered Copaxone, you must meet the following criteria:

You have been diagnosed with MS

You must be able to walk independently with an EDSS of 5.5 or less for glatiramer acetate, meaning that you must be able to walk at least 100m without assistance

You must have experienced at least two clinically significant relapses in the last 2 years

Benefits

The severity and frequency of relapses has been shown to be reduced in clinical trials whilst Copaxone is being administered, making it an effective medication for managing relapsing remitting multiple sclerosis.

In the largest clinical study, the relapse rate of the group was reduced by 32% compared to a placebo treatment. It generally takes around 9 months for the full benefits of Copaxone to become apparent. In the long term (Copaxone usage of 10 years), patients average one relapse every 5 years.

Side Effects

Common side effects:

erythema (redness at injection site)

pain for several minutes at the injection site post injection

swelling at injection site

lumps around injection site

inflammation

chills

a temperature

Less common side effects:

flushing of the face and chest

tightness in the chest

shortness of breath

rapid heart beat or palpitations

These less common symptoms are also known as Immediate Post Injection Reaction (IPIR), usually resulting from accidental injection directly into a vein.

Injecting

Copaxone is administered via subcutaneous (below the skin) injections. The needle is inserted roughly 5-7mm into the skin. It is painless as the needle is thin (22 gauge) and isn’t going deep enough to enter muscle tissue.

An autoinjector is supplied with the first lot of syringes and can be used to inject rather than injecting manually. The syringe is loaded into the autoinjector and it fires the needle into the skin and depresses the plunger, administering the Copaxone. I have a medical background and decided from the beginning never to use the autoinjector as my injection technique is good.

The autoinjector is useful for those who are afraid of injecting themselves or who suffer from reduced mobility in their hands, but I feel it’s a little brutal when introducing the needle under the skin, removes control over the injection, and may lead to bruising around the injection site. If you’re able to, it’s worth considering having your MS nurse train you how to inject manually rather than with the autoinjector.

Injection Rotation

Copaxone is administered via daily 1ml subcutaneous injections. Injections sites must be rotated, with 7 different areas around the body as designated injection sites. Rotation of injection sites and areas of injection within those sites is essential to prevent permanent hardening of the skin or lipoatrophy (loss of subcutaneous tissue).

The 7 separate sites are:

Upper left arm

Upper right arm

Abdomen

Left hip

Right hip

Left thigh

Right thigh

There is no correct order to rotate through these sites in, you will find an order that suits you. You must inject in a different site each day for 7 days.

Injection Sites

A diary is provided to note down where you inject each day, and has space to note any problems.

Copaxone Injection Diary

Hints and Tips

Establish a good daily routine and perform your injection at the same time every day when your energy levels are highest (e.g. when coming home from work, when getting up in the morning, lunch time). It’s easy to forget to inject, and establishing a good routine forms a good habit of injecting at the same time each day and means you’re much less likely to forget.

Set an alarm on your phone for injection time every day. Injecting will very quickly become second nature and you shouldn’t need this for long.

The gel pad provided in your pack can be used to cool / warm the injection site either before or after injecting. You can phone and ask for an additional one should you wish to warm / cool beforehand and do the opposite post injection. It’ll take some experimentation to find which is the best combination for you, or if you need to warm / cool the site at all. I find it easier not to heat or cool either pre- or post injection.

Take your syringe out of the fridge 20 – 30 minutes prior to injection to allow the liquid to warm to room temperature as cold fluid injected into the body can be uncomfortable.

Warm the syringe to body temperature in your hand immediately prior to injection – this can also help to reduce any discomfort.

Always inject at a 90 degree angle to the body.

Immediately after the injection, apply firm pressure with a cotton wool ball to the injection site for 30 – 60 seconds to minimise any bruising or discomfort.

Do not rub the injection site.

Do not inject into scar tissue or stretch marks.

Avoid injecting an area where clothes, such as waistbands, will rub.

Avoid injecting after a hot bath or shower, or exercising.

Note in your injection diary any tips that you find make injecting easier, and also note any issues to speak to your MS nurse about.

The abdomen injection sites are anywhere further than 5cm from the navel. Point your index finger at your navel, and your second knuckle is approximately 5cm from your navel. Anywhere outside of this is suitable to inject in.

When flying, Copaxone must be taken on board in hand luggage as it would freeze in the luggage hold and be unusable. You can obtain a letter from your consultant to show to the airline and security at the airport stating that the medication must be taken in hand luggage and is safe.

If you require travel sharps boxes or cool bags / packs for travelling with your Copaxone, the distribution company which delivers your medication will supply these free of charge if you phone and request them.

If any fluid escapes the needle prior to injection, tap the syringe to remove the fluid.

Do not remove the air bubble from the syringe – they’re designed to be injected.

How effective is Copaxone?

Evidence supporting the effectiveness of glatiramer acetate in decreasing the frequency of relapses in patients with Relapsing-Remitting Multiple Sclerosis (RR MS) derives from two placebo-controlled trials, both of which used a glatiramer acetate dose of 20 mg/day. (No other dose or dosing regimen has been studied in placebo-controlled trials of RR MS).1 A comparative trial of the approved 20 mg dose and the 40 mg dose showed no significant difference in efficacy between these doses2.

In its pivotal trial 3 of 251 patients, after 2 years Copaxone failed to show any advantage in halting disability progression (78% of treated patients were Progression-free versus 75% Progression-free on placebo).

However, a 2004 Cochrane Medical review4 pointed out that “Glatiramer acetate did not show any beneficial effect on the main outcome measures in MS, i.e. disease progression, and it does not substantially affect the risk of clinical relapses.”

As a result5, the FDA marketing label for Copaxone does not as yet have an indication for reducing the progression of disability.

On February 25, 2010, a long-term study on Copaxone was published in the February issue of the journal Multiple Sclerosis. It was the longest prospective and continuous evaluation ever conducted in relapsing-remitting multiple sclerosis. The fifteen-year clinical study showed that more than 80 percent of patients were still walking without assistance, despite a mean MS disease duration of 22 years, and two-thirds of the patients have not as yet transitioned to secondary progressive MS. Patients who remained in the study over 15 years showed a reduction in relapse rate from baseline, as well as minimal increase on the Expanded Disability Status Scale (EDSS.) It also established the long-term safety profile associated with Copaxone. 6

In 2 recent studies, both reported at the 2007 ECTRIMS meeting, the efficacy of glatiramer acetate was compared to high-dose/high-frequency interferon beta. In the REGARD study, Rebif was compared to glatiramer, and in the BEYOND study, Betaseron was compared to glatiramer. In both trials, there was no significant difference between interferon and glatiramer in the primary endpoints (time to relapse) or in any clinical endpoints, although some differences in MRI measures of disease activity have been claimed.

A recent study by the Department of Neurology at The University of Texas Health Science Center argues that a double-blind three year study failed to demonstrate a treatment effect of Glatiramer acetate on Primary-Progressive Multiple Sclerosis.7

In February, 2009, the FDA approved an expanded indication for Copaxone “for reduction of the frequency of relapses in patients with Relapsing-Remitting Multiple Sclerosis (RRMS), including patients who have experienced a first clinical episode and have MRI features consistent with multiple sclerosis.” 8

The expansion of Copaxone’s indication to include patients with a Clinically Isolated Syndrome (CIS) is based on a clinical trial (PreCISe) which showed that Copaxone delayed the progression from the first clinical event to Clinically Definite Multiple Sclerosis (CDMS) in a statistically significant and clinically meaningful manner, corresponding to a risk reduction of 45%. The proportion of patients who converted to CDMS was 43% for the placebo group and 25% in the Copaxone group. 9

6. The study “Continuous Long-Term Immunomodulatory Therapy in Relapsing Multiple Sclerosis: Results from the 15-Year Analysis of the U.S. Prospective Open-label Study of Glatiramer Acetate,” a follow-up to the pivotal, Phase III trial, followed 100 ongoing Copaxone® (glatiramer acetate injection) patients starting in 1991. Patients’ EDSS scores were evaluated every six months. Confirmed disability progression was defined as ‰¥1.0 EDSS point increase sustained for six months. Patients were classified as “stable/improved” if EDSS score changes were less or equal to 0.5 points. Proportions of patients who reached confirmed thresholds of EDSS 4, 6, or 8 while on Copaxone®, and Kaplan-Meier (KM) estimates of median times to these thresholds, were obtained. http://www.mscare.org/cmsc/Informs-Copaxone-Demonstrates-Robust-Long-Term-Efficacy-and-Safety.html

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Many people are given a Functional Electrical Stimulator (FES) to help with foot drop by stimulating the muscles in the leg with each step to lift the toes and aid walking. Some find this an uncomfortable device to use, and it can be a little inconvenient. I was recently shown Foot Up by someone with foot drop. It’s a discreet and comfortable orthosis for use by those with foot drop and supports the foot from the moment it’s lifted. I thought I’d post the link here as it’s a great alternative to an FES. There are versions to be worn with shoes and without shoes, and it’s easy to swap between footwear. Foot Up

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It’s often difficult to explain the impact of MS related pain and fatigue etc on your daily life. The Spoon Theory was created by Christine Miserandino to explain to a friend how lupus affects her day to day life. It’s a fantastic, simple and visual way of explaining to friends and family the limits that are sometimes placed on the amount you can do in a day. From personal experience, I’ve found that people can sometimes find it difficult to understand that you have to prioritise what you wish to accomplish in a day, and accept that some of it may not be possible.

Although this isn’t always the case and there are days we can do whatever we like, The Spoon Theory is especially helpful as an explanation when limited days are an uncommon occurrence and it may be even more difficult for people to understand when these do happen as they are so rare. Even if you don’t need to explain to anyone, it’s a great read very insightful, and well worth the time to read.

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I wrote this short blog post for Wego Health’s September blog post competition, and it’s been warmly received, so thought I’d post it here too.

I wanted to write these tips with those newly diagnosed with MS as part of the September Health Activist Blog Carnival. I was diagnosed with MS over a year ago, and fortunately took it all in my stride, but everyone’s different, and I felt these tips would help anyone newly diagnosed with MS.

Stay positive! : ) – often, a diagnosis of MS can be upsetting, and seem awful at first, but life is still fab with MS. The negative points are often thought of first, and can swim through your head, but MS can be well managed and there are many medications and treatments such as physiotherapy which help a lot. Your life continues; just along a slightly different path, and you learn to adjust to achieving the same result through different methods. There are also some amazing MSers out in the world of the internet who’re a great support, lovely people and very positive and informative.

Tackle your feelings regarding your diagnosis – a diagnosis of MS can sometimes come as a shock, out of the blue, and there are a range of emotions to be tackled. Don’t ignore them: tackle them head on and acknowledge them. The only way to deal with these emotions and move through them is to recognise them and give them their place. Talk to people about them; your family and friends, and as they say, ‘a problem shared is a problem halved’! Vocalising your feelings also helps.

Research – the more you know about your MS and the options avilable for management or treatment, the better placed you are to understand your MS and what treatment and medication may be available to you. There’s a huge amount of information on MS available, and it can be overwhelming at first. Stay calm and work your way through it, approach the information clinically to decide what is relevant to you and what is not. It’s empowering to know what’s happening to your body, and what’s causing it. You feel more in control, and this helps a great deal when living with MS.

Keep in close contact with your healthcare team – your healthcare team is an incredibly valuable resource, and they can help you with many things. Apart from the obvious prescribing of medication and providing treatments, they’re also a great source of information and advice, and can be very beneficial to you, especially during the early days post diagnosis. They’re also very supportive, and can often point you in the right direction of resources, support, or fun things to do. Decide with your healthcare team how you want to manage your MS– it’s your body and your choice to choose from the appropriate options provided to you.

Start a blog – writing down your feelings, what’s happening, charting your progress, or anything you want to talk about can help you to organise your feelings and thoughts into a neat bundle for you to process. It’s cathartic to write what you’re feeling and thinking, and what you’re experiencing, and providing information for others not only helps them, but it helps you too. I found a sense of purpose from writing an informative blog, and learned a lot myself in the process. Blogs can be kept private, so nobody in the world can read them except you. If you don’t want to share your thoughts and feelings with the world, it’s a very handy option to keep your blog private but still reap the benefits of writing it.